Mental health, psychosocial functioning, and health-related quality of life of children and adolescents with bladder exstrophy, cloacal exstrophy, and epispadias: A scoping review.

Background: The exstrophy-epispadias complex (EEC) is a spectrum of rare congenital defects affecting the genitourinary system that includes epispadias, bladder exstrophy, and cloacal exstrophy. EEC patients may require several surgeries throughout their lifetime and experience a number of difficulties that may impact their quality of life (QoL), mental health, and psychosocial functioning.

Objective: The purpose of this scoping review is to systematically map existing literature that explores the mental health, psychosocial functioning, and QoL of children and adolescents with EEC.

Study design: A search strategy on multiple bibliographic databases was created using a combination of Medical Subject Headings (MeSH) and keywords for the concepts of bladder exstrophy, cloacal exstrophy, or epispadias.

Results: The initial search identified 6303 unique articles. 254 articles were selected for full-text review, and 76 articles were identified for data extraction. Articles were excluded if they solely focused on adults. 25 articles are included in this review regarding child and adolescent experiences with EEC.

Discussion: Many child-focused studies utilized HRQoL measures to explore changes to an individual's quality of life after undergoing specific continence surgeries, with many studies finding improved QoL after surgery. As children age into adolescence, the research also demonstrates that experiences with QoL may change, with additional differences by gender. Body- and self-image seemed to become more of a concern as patients aged into adolescence, with special consideration for cloacal exstrophy patients who often undergo routine neonatal assignment genetic male to female.

Conclusions: The existing literature suggests that current measures do not demonstrate that children and adolescents with EEC function differently than the general population, but children with EEC have a greater likelihood of experiencing a wide range of emotional and behavioral problems as they reach adolescence. Future studies should further explore manifestations of mental health and QoL throughout the life course.